As of this writing, the policy battle over repealing and replacing The Affordable Care Act (ACA) continues in Congress. The issue that gets the most coverage at the moment is how big the loss of health insurance coverage for individuals will be under the proposed Republican sponsored American Health Care Act (AHCA). Just-released estimates by the nonpartisan Congressional Budget Office state that 24 million Americans will lose their health insurance coverage within a decade.

Also included in the repeal bill are dramatic changes to Medicaid, which currently provides community long-term services and supports to disabled and older adults and acts as a safety net for all of us in the future. These changes directly affect family caregivers as they relate to the availability of home and community-based services for disabled and older adults.

Medicaid Pays for Nursing Homes and Alternatives

Medicaid provides federally required health and long-term care services in the states for low-income disabled and older adults. In its basic package of services, states must cover long-term nursing home stays. Within the past 15 years, states have experimented with supports, called Home and Community-Based Services (HCBS), that have provided alternatives to nursing homes.

We talk with families daily who never thought they would need Medicaid services, but they have spent their life savings on caring for a family member.

This has allowed individuals a choice to receive services at home at a much lower cost with a higher level of satisfaction. These services are under special waivers proposed by the states and granted by the Centers for Medicare and Medicaid (CMS). Recently, the balance was tipped for the first time in favor of home and community-based services serving more disabled and older adults than nursing homes.

Personal Care Services in Demand

One of the types of services most often used by low-income disabled and older adults are personal care services. This consists of an aide coming into the home to assist with care tasks. Many of the states that have HCBS waivers that include personal care services also have “participant-directed” or “consumer-directed care,” allowing for the adult with disabilities to hire his or her own aide. Many states also allow family members to be paid to provide these services.

Family caregivers ask us: “How can I get paid to provide care to my relative?” This is the program that best offers the opportunity for those who have quit or pared back their own employment to have some source of income while caring for a family member.

Less Funding Through Block Grants

Under the repeal and replace policies within the American Health Care Act, Medicaid would become a “block grant.” That would mean a capped amount would be given to the states instead of allowing Medicaid budgets and reimbursements from CMS to rise or fall according to the need and demand. All expert health care analysts who have reviewed this change agree on this one fact: block granting Medicaid funds for the states means less funding in the future than now, and dramatically so.

To make up this shortfall, states have limited options. They can change eligibility requirements, change payments to providers, severely limit services, raise state taxes or cut other programs within the state. Most states would lose millions of dollars and the deficit would get larger over time because we have an aging population who will need these services in the future.

For family caregivers, Medicaid block grants would mean an almost immediate loss of the amount of services provided currently, as states find ways to increasingly trim expenditures.

States and Nonprofits Can’t Make Up the Difference

What is the likely prospect of raising enough revenue to cover these services within a state? Nil. What is the likely prospect of community-based nonprofits filling the gap? Nil.

Why? Because this is a problem beyond the scope of individual efforts. It rests with the national collective will to make sure that disabled and older adults and their family caregivers have the vital services that will allow them to remain in the community.

It is clear that Medicaid block grants are a bad deal for family caregivers in a variety of ways: loss of health insurance coverage, loss of home and community-based services and loss of safety net security for those disabled and older adults and their family caregivers. It almost guarantees more stress and pressure for families, as they scramble to find help and support with care.

We talk with families daily who never thought they would need Medicaid services, but they have spent their life savings on caring for a family member. Even if you don’t think you will need these services, it is important to retain them as a safety net for everyone, now and in the future.

A Call to Action

At the Family Caregiver Alliance, we believe that if you think this is an important issue, the time to make your voices heard is now. Call, email or mail your Congressional representatives now. If you are not sure who your Representative or Senators are, look them up here: House: www.house.gov/htbin/findrep, Senate: www.senate.gov/senators/contact.

Center on Budget and Policy Priorities The Center is a leading source of analyses of federal budgeting developments affecting all sectors of the economy, including health care. Just launched: Sabotage Watch: Tracking Efforts to Undermine the ACA. Depressing title — good information.

Next Avenue Editors Also Recommend:

Kathleen Kelly, MPA, is executive director of Family Caregiver Alliance, a national nonprofit organization that provides direct caregiver support services, public policy development, research and public awareness regarding family caregivers. As director, she oversees programs of the Bay Area Caregiver Resource Center (providing direct services to families in the San Francisco Bay Area), California policy collaborations, and the National Center on Caregiving.

Next Avenue brings you stories that are inspiring and change lives. We know that because we hear it from our readers every single day. One reader says,

"Every time I read a post, I feel like I'm able to take a single, clear lesson away from it, which is why I think it's so great."

Your generous donation will help us continue to bring you the information you care about. What story will you help make possible?